How do people who get involved want to be known?

Many different terms are used to describe people who get involved in research, including:

‘PPI’ representative/member

Patient (or carer) representative/member

Lay representative/member

Member of the public/public representative

Lay/patient advocate

Lay researcher

Citizen representative or researcher

User/service user

Consumer or client

Survivor

Patient/public/citizen partner

Patient/public adviser

Patient/public contributor

Research partner

User or patient research consultant

Expert by experience

We asked people what they thought about such terms and what they would prefer to be called; Rosie said the debate was “a nightmare”. One group of people felt it didn’t really matter. ‘PPI (or ‘Patient and public involvement’) is a widely accepted term – but it can be mistaken for ‘payment protection insurance’, and there was general dislike of confusing abbreviations, which were seen as meaningless and off-putting.

Andrew is retired, but he used to work as a teacher before he became assistant director of children’s services. He is married. Ethnic background: White British.

I get a little bit impatient about the debate around language here. I will use PPI because it's a generally accepted term. I know that there are objections to it or some people will see it as restrictive or not, not properly comprehensive, that's also fine. Then I think it may be helpful to talk about patient involvement, where we're talking about people from particular disease and areas where they bring that particular perspective to things. I think it can also be helpful to talk about lay involvement where we're not assuming that someone comes with a particular set of health issues themselves, but represents this wider public accountability aspect to anything. But, probably the important thing is to have the debate and then pass quickly on to getting down to business and not getting too tied up over the language.

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56

Sex:

Male

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Peter is married. He formerly worked as a business consultant, providing training and consultancy to large technology companies.

I don't know because I think all of the labels have drawbacks and they're not quite right, you know, there’s something not quite right about all of them. So this is the debate that's been going on for quite a while. And service user was the kind of label that I came in with if you like, or patient advocate, then service user, and then consumer seemed to be flavour of the month, and PPI seems to now be the kind of overall label that's given to all of it. And frankly I think it's as good as any, I really don't get too hung up on it. It's what happens that matters rather than what people are called. And if PPI evolves as a term that people understand and they know what it means, then that's fine. I don't think it really matters.

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Age at interview:

54

Sex:

Male

Background:

Richard is single and formerly worked as a senior manager in local government before giving up work to do patient and public involvement. Ethnic background: White British.

The difficulty sometimes with PPI as an acronym is that we forget what it stands for – patient and public involvement – and I have actually seen documents talk about ‘PPI involvement’. I've also heard people talk about ‘PPI engagement’, which is an even more curious set of circumstances. But, you have PPI. In cancer, we tend to use the word consumers, consumer involvement, or sometimes consumer engagement. People sometimes use involvement and engagement interchangeably and, as well as patients and the public, we have carers who sometimes want mentions, especially in the mental health, for example. We also have families, who want to be involved not necessarily because they're carers, but simply because they're families. We also have situations where some organisations will still have lay representatives. Patient partners, public partners, and so on, and so on. I don't think any set of words, or any acronym, will ever satisfy everybody. It would be nice to have one understood, acronym or name. I think PPI may well be the closest we've got as the most commonly used, but the fact that it is a set of initials masks what it stands for. I think too there are questions about involvement and what that actually means. It perhaps comes close in some people's mind to participation, and in other people's minds to engagement, which to me are two different things. But there may well be people watching this who actually say, "Well all three are the same thing." So I, we just need to find a better name for it. It won't be me that does it because I don't know what the answer is, but we need to find a better and more accurate name and I, yeah I don't know.

Others had strong (but very different) opinions about particular terms; as Neil said, ‘The whole point now is for researchers to view the input of the lay people as sufficiently important, almost as important as their work itself…. So how they are treated, how their views are received, even how they're labelled has to reflect that respect.’

Catherine is a self-employed telesales consultant. She is widowed and lives with her 14 year old daughter. Ethnic background: White British.

I like being the parent carer representative on my group. I use that terminology, that's what best describes the scenario. I was the parent, I was caring for my child, I'm in a group for people who look at research into children's conditions and that was the requirement, was that you were a parent of a child. You can actually have the condition yourself [coughs], but I don't think that gives you the same emotional impact if you've only had the condition yourself. Until I had a child I had no idea what it was like, and nothing can prepare you for the protective emotions you have towards your child. You can't extrapolate them, just as the gentlemen who developed their own form of cancer and then were experiencing it first hand from the other side of the table. You can't understand what that's like, so using the word parent carer for me is very appropriate for the group that I'm in. I don't like PPI, it's one of these three letter acronyms that seem to be allocated to everything and it makes it sound technical. I think PPI puts normal lay people off from applying for jobs if it says a PPI. When something says a lay member, I apply for it because that word is the right word, you're a lay member, you're not an expert but you're lay expertise is wanted. So I think lay and parent carer, for me, is much better than PPI or public patient involvement or whatever.

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Age at interview:

71

Sex:

Female

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Maggie is retired, but worked as a health visitor for most of her career. Her daughter died of Reyes Syndrome when she was two years old. Ethnic background: White English.

I said, "Well we didn't see ourselves as representative," and he said, "Well say so, you know, don't call yourselves representative, you need to say so." So we don't. We had to come up with a better – we didn't like consumer, we didn't like user, and we feel that patient advocate is the best because, as a group, we can't be representative. We do try to keep up to date, we do try to have involvement in our local groups as well so that we do try to take a more broad view into the work. But to do what we are doing, you cannot be representative – you have to have developed some expertise, you have to develop some further knowledge, you have to give time and commitment and not, it's not everybody's cup of tea, not everybody wants to do it. And so you can't be representative, but we can advocate for other people. And to do that is a responsibility and the responsibility includes being educated to do it properly.

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68

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Male

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Tom lives with his wife. He is retired but formerly worked as an electrical engineers. Ethnic background: White Scottish.

I don't particularly like using the term patient representative because I don’t go to meetings with a mandate from a patient group. My, what I say, what I do is my own personal views, it's not, it’s not mandated or influenced or anything like that, so I don't particularly like patient representative. Consumer is probably as good or as bad as any maybe. I mean there was other ones that we had once – what was it? Public partner is another one which, I don't know. Lay person I suppose is, is as good as any as well but then again that doesn't cover a lot because when way back many years ago when I was, at that time, the lay representative is the expression that this organisation was using. But what I was finding or what we found is, or what was happening was that many of the so called lay representatives were ex-medical professionals in some manner. So to me a lay person is someone who has no, or limited knowledge, of a particular subject but here were, there where these virtual experts but they were being called lay persons because they had been away from, what they were doing for three or four years or something, so they were classed as lay person. It's a bit iffy. So it is, it's a difficult one, you know, lay person, consumer – that's some of the names I've been called, but no I don't know what the, you know, everybody's got their own opinion of it. Probably for me consumer or lay person is probably as good or as bad as any.

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71

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Male

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Charles is married and has two grown-up children, aged 44 and 42. He is retired from his job as a research manager. Ethnic background: White British.

It's very difficult because I used to think that I came from a technical area which had a lot of acronyms in it, until I actually got into the health field and I was absolutely overwhelmed by them [laughs]. I dislike acronyms because, because actually it's all too easy to lose people and if you're trying to, if you're a health service provider and you're trying to communicate with the public, even a simple term like ‘a service user’, that took a while to soak into me exactly what was meant. I quite like the term, ‘a patient rep’. The difficulty is that that would tend prima facie to exclude carers or members of the public who were concerned to improve health care in their particular area. But I really don't like, you know, PPIs or service users and the rest of it, and if I'm forced back into a corner then it's a patient representative, or I guess a member of the public. I think things should be very simple and very transparent. It's very, very hard to maintain that in this field.

The word ‘consumer’ wasn’t really liked, even by people who used it to describe themselves. Margaret, a member of a cancer consumer forum, said, “It's not a name that I necessarily like and I actually prefer PPI rep or a lay advocate in research.” Roger said, “I dislike the word ‘consumer’, which NCRI [National Cancer Research Institute] uses, despite the fact that I chaired the group for three and a half years.” Carolyn thought consumer sounded “a bit passive”.

There was a wider range of views about words like ‘patient’ (or ‘carer’), ‘lay’, ‘public’ ‘user’ and ‘citizen’. Not everyone who gets involved in medical research sees themselves as a patient or carer. ‘User’ is a common term in mental health, but some people actively preferred ‘patient’ (or ‘carer’).

Dave is married and has one daughter, who is 30. He is retired, but worked as a deputy head teacher in a junior school. Before that, he trained as a nurse. Ethnic background: European.

I don't understand this business about patients. I'm not sure what a patient is. I mean we're all a heartbeat and a footstep away from becoming a patient. I recently had an arthroscopy of my knee. That was, that was six, seven weeks ago. Am I still a patient? I know someone who's perfectly healthy, but they do have medication for blood pressure – are they a patient? I mean I'm not quite sure what a patient is actually. I mean [male researcher’s name], top of his profession, a professor there, he's just as much a patient I imagine as I am. I don't really understand this patient participant. You could be a patient participant, I don't know your medical history, but I'm sure that you could, you could class at some degree as a patient. I'm not sure where this idea of patient comes from. I prefer lay, I think the lay researcher is, rather than a patient participant.

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54

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Male

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Brin is married with three children, aged 26, 24 and 23. He worked as a secondary school teacher and took early retirement after a stroke. Ethnic background: White/British.

Yeah I hate the term service user, I really do loathe it. I think it's very, very patronising, very demeaning. You know I have a very good example of my first experience of being a service user. It was back in 2009 when I took part in a seminar on skills for health in [place name] and there was a professional facilitator for the conference, for the workshop and we had a break, normal break out to tables and there was a table for the academics, a table for the clinicians and there was a table laid with the users and that was for me, [laughs] which I was so angry about you know. I felt like getting out a twenty pound note and pretending to snort something illegal, it just, it felt that bad. You know I was a bit precious about what I called myself early after the stroke, you know. I didn't want to be a stroke victim because I think that's a dangerous term and I didn't want to be a stroke survivor because I thought that was a bit clinging on, you know, with your fingers and I wasn't there and I was far, way beyond that and I went through a time when I called myself a strokie because you'd got foodies and various other people like that and it just sounded a little bit softer but it had a function. It was easy to say if your aphasic and now I call myself a stroke activist because that's what I am.

And I can back it up. So all the other terminology, I think some people want to be just called patients. I think that's safer. If we've had some form of injury or illness we're a patient. Everybody's been…had some experience of being a patient at some time, I think that's just a safer, kinder, more easily understood term – it's all encompassing but service user is a no no.

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Age at interview:

60

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Female

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Mary used to work in marketing before moving into the civil service. She currently works as a mental health service user consultant. Ethnic background: White British European.

[laughs] I think the best term to describe yourself is the one that you're comfortable with. There doesn't have to be a collective noun – for example, service users - it should be mental health service users or mental health service user. Because then that defines you as somebody who uses mental health services, and then it's ex-mental health service user. Or there is the more radical campaign – user survivor; somebody who currently uses mental health services but also feels that the treatment they've been given is, means they've had to survive the system, rather than being helped at all. Or you can actually be a survivor and feel you're helped by the system. It just, it's what you feel, people detest ‘service user’ because, or when it's shortened to ‘user’ in particular, because they say it’s like a drug user or, but I've never felt that. I mean I call myself a ‘mental health user consultant’, and that to me is, means I'm a user of mental health services. I should say ‘mental health service user’ but it's a bit too long. So I'm very comfortable with mental health user consultant – it's worked for me, people know what it says on the tin.

Patient and public involvement – I'm quite happy with it. But I've lived with it for quite a long time, and so I know what it means and what it's meant to mean. And sometimes I'm ‘patient’, sometimes I'm ‘a public’ and you know. I actually quite like the term ‘lay person’. I think that is, I'm trying to reclaim ‘lay’ if you like, because again going back to ethics committees and other things. The people, they're all meant to be lay people but they're retired doctors; they're retired nurses, they're retired. So, they're not lay at all, even though they've been retired a few years. And, I just think we need to do something about ‘lay’ and I think lay would be a good way forward.

The word ‘lay’ is sometimes felt to imply a lack of skill or status and is therefore often avoided. Mary wanted to ‘reclaim’ the word ‘lay’ to ensure it didn’t refer to people who came from professional backgrounds, and others agreed it could be confusing. Dave X saw most of the lay members on his local clinical commissioning group as “just people drawn from echelons of business and stuck in there as The Lay Member. They're not really patients or users, consumers as such, so I have difficulty with that – I don't like that term at all.” It also reminded him of lay readers in church.

‘Research partner’ or ‘patient researcher’ may suggest more equal membership of the research team. Jennifer thought you were more likely to be listened to if you were called a partner. On the other hand, it might also mean academic research partners in other universities or organisations.

Rosie is divorced. She is a PhD student researching patient and public involvement in research. Ethnic background: White British.

The terminology is a complete nightmare, it's a complete nightmare. Again I think it's very dependent where you come from so in mental health you can never call people patients or most people don't want to be called patients, so it's always service users although lots of people don't want to be called service users either so lots of people say they want to be called survivors. So even just in mental health there's a massive argument really that goes on runs and runs about this I think. You know and different people just, you just have to decide, you know, in the end like in your… I quite like the term research partner which is the term we tend to use here although I think it can be ambiguous because , and in one group I know they call them patient research partners, you know, which is less ambiguous, but I think it can be ambiguous because I've used that term to an academic researcher and he said, "Well my colleagues in Manchester are my research partners," you know so it's…do you know what I mean, it's not an unambiguous term in that way. But I guess it's more, it kind of gets around this whole patient/user problem. I mean a lot of people like the term experts by experience but that actually is quite a difficult term, you know, it's not an easy term to use in writing or, you know, in some context it works alright but other people it doesn't. You know I mean I just, I, what I try to do, the way I deal with this myself is I try not to engage in the discussions about what's the right terminology because I don't think we can ever get there.

I try to adapt the terminology that I use to suit the people that I'm with so for example in one of my current PhD case studies they talk about PPI all the time, that's what everyone, they've had PPI groups, they talk about PPI, so that's the term I use. You know I just kind of surrender to the environment in this sense and I don't think, you know, I suppose where I've got to with this is I don't want to waste my energy talking about terminology, I'd rather do the work and, you know, in a way I don't really care what I'm called, you know, I care more about what the job is I'm doing and whether it's making a difference.

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Age at interview:

67

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Female

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Hazel is married and has three children, aged 36, 31 and 29. She works voluntarily with a charity for children with heart conditions and their families. Ethnic background: Caucasian/European.

Well there often are research partners who are , and that is often used to mean companies or organisations which actually are, are partners in, in setting up the research, so that I think oh it would be a confusing term, partners.

No I'm not keen on that either. I did work for a local authority for a while in London as a marketing communications director and, you know, this whole partners business is very weird in a way. It's kind of like a way of excluding people who are not partners so I'm not, not very comfortable with that.

It's difficult to get the terminology right to find something that captures what you do so that other people could understand it but also makes you feel appropriately titled I suppose as well.

Well member is quite a good word.

Yeah… and lay member or just member?

No, no just be the one member. I mean why, why does one have to go any further?

Most people agreed there was no easy answer to the question, but researchers need to be aware that it is a sensitive issue for some people. One solution is to ask people how they would like to be called at the start of a new project, and then move on. But Brin and Marney, who are both stroke survivors, said how people refer to themselves may change as they recover from illness and become more involved, so researchers need to think about this too. Both Francesco and Carolyn liked the idea of just using people’s names, and Hazel said that the correct term was simply “person – human being”.

Francesco is married with two children, aged 21 and 18. He is retired, but previously worked as a manager of a residential children’s home. Ethnic background: Italian.

The one thing that I would say to professionals when you're involving people in research is allow the individual to allow, allow them to define how they want to be known because they would probably, they were probably given a first name before any other name. Oh there's baby Anne-Marie there, you know, they weren't a service user, they weren't a patient, they weren't a client or a carer, but some people, their marketability in terms of being involved in research as a result of their lived experience, so you know, if they want to refer themselves as a survivor then fine because that's their selling point.

It immediately has, you know, meaning to people at the other end. I've always been a public contributor when I was on the health services and delivery research board, I got the names changed. But that was personal to me. And the other person he was quite happy –service user board member. I didn't want to be known as a service user, I want to be neutral, generic but allow other people, allow themselves to define. That's why we've got the name public advisory group. And then individuals can self-define themselves through their biography. I think it's quite important that and then what you have is the skilled knowledge base.

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Age at interview:

69

Sex:

Female

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Carolyn has four children, including two step-children, aged 25, 26, 32 and 35. She worked in careers psychology and has retired from her job as Director of Career Development at a large English university. Ethnic background: White Irish.

Oh. It's probably just as well you didn't ask me this at the beginning because we'd still be talking about it! [Laughs] Oh I kind of, oh God! [Laughs] There's nothing I particularly like. Somebody once called me activist so that was when they writing me into a funding bid for a particular organisation whose, you know, bells that would have rung. No I never know. I sometimes actually come back to saying patient. Consumer sounds a bit passive – it's used a lot in research particularly in cancer research – but it sounds a bit passive, on the receiving end of to me. Patient obviously has its own problems. Service user sounds very kind of, just sounds like, you know, a bureaucratic term someone's come up with. You know, I'd quite like to get to the point where I’m just Carolyn, you know, but of course you can't do that, you have to describe yourself in some, in some way. I think it's useful to have the P, the second P in PPI or now a lot of people are having say PPE because engagement of all kinds, part of what they've been tasked to do. But you are, in a sense, thinking and feeling as a member of the public as well, and sometimes you need to be able to remind people of that so that's helpful. I'm wildly inconsistent, I will use different titles in the one session partly because there isn't any one particular thing that feels right. People will argue about this endlessly. I just want to get on with you know of doing 'it', whatever 'it' is yeah.